We went to see Dr. Ward today to have the sutures removed from Theo's shunt surgery. He didn't like that part too much but he did love the car ride and being in the stroller. He loves to go for rides. He is doing pretty well today. We are just taking things one day at a time. There isn't a whole lot to report. We are going in for another MRI on November 30th, a Wednesday. On Thursday, December 1st, we will meet with all the doctors to review the MRI and see what is going on with Theo's very special little head. We are concentrating now on keeping him as comfortable as possible, as content as possible. It's going pretty well, he is much more comfortable here than in the hospital. He sleeps on and off throughout the day but is awake and alert for several hours at a time. He usually sleeps most of the night. His last feeding is at midnight and ends at 1:00 a.m. so I usually stay awake until then and give him his morphine dose at 1:00 when his food is finished. Jamie usually gets up at 4:00 a.m. to give him his next dose. Sometimes Theo wakes up around that time and needs a diaper change, when this happens, it can take a while to get him back to sleep--he doesn't much like his diaper changed or to be disturbed. But he will usually fall back to sleep and sleep till about 8:00 a.m. Then he is fed again and given several of his medications. He naps on and off throughout the day. When he is sleeping he looks so peaceful.
We have decided not to publish Theo's custodial account number but to give our mailing address. If anyone wishes to send anything to contribute to his account, please send it directly to our home. Any checks should be made out to him. His full name is Thelonius Luther Helbert Fueglein, you can use the whole thing or just Thelonius Fueglein. If you send any checks addressed to either of us, we will still make sure it gets to his account, but it would save a step to send things addressed directly to him.
Our mailing address is:
527 North Sheppard Street
Richmond, VA 23221
We continue to be amazed at and grateful for the generosity of our friends and family. So many people have dropped off food and gift certificates for groceries and a couple of massages, our whole street got together and got us meals for a week from a local chef. I almost cried. We are so loved and supported and it means so much.
I am trying to continue to post regularly, about every other day. Things are a bit more hectic now, but they are settling down some.
Please continue to offer up prayers for Theo and for us.
All our love--
Karla
Wednesday, September 28, 2005
Saturday, September 24, 2005
9/24/05
Things are going ok with us at home.
We are both still getting used to having him here and are both dealing with all sorts of emotional ups and downs. It'll be that way for a while I imagine. Today is an ok day--not a good day--but an ok day for me. Theo is about the same all the time, now that we are getting his medications straight. He is on a good dose of morphine so that he is comfortable but not knocked out, we are learning how he is most comfortable, how he likes to be held, positioned, etc. He has times where he seems to feels pain or when he is agitated, for which he gets ativan as he needs it, but we are learning how to best calm him down and help him be soothed. He is mostly peaceful and content. We can tell he knows he is in a safe place, he senses who we are, he responds to our voices and touch, he knows he is loved. He loves to be held and cuddled, he likes to dance to music that he likes (especially Thelonious Monk, Miles Davis, Duke Ellington, a new cd of children's songs given to us by a friend of Jamie's), he responds to our love and care. All of these are good things. Jamie and I are getting used to the new Theo and the whole idea of how things are and how things will be as well as still dealing with the trauma of the last several weeks and the fear of the known and of the unknown. It'll take a while. In dealing with right now though, we luckily have strengths in very complimentary areas. He is better at knowing how to load and run all the pumps and machines, change the medication cassettes for the iv, measure out doses and keep the med schedule straight, note everything down, while all that makes me a little crazy, nervous and frustrated. And I am a little better at being comfortable holding, changing, bathing, comforting our new Theo, being ok while I am with him. Both of us are getting better at everything and are helping and supporting each other where we need help. I am so grateful to have him. He is a wonderful Daddy and my best friend. Most of the time you hear only about me through these posts; my thoughts and feelings. I don't say enough how wonderful Theo's father is. Theo is lucky to have such a loving, strong, reliable, giving, sweet man for his Daddy and so am I.
We are doing ok. I usually feel at a loss for what to tell people when they want to know what we need, because I don't really know what we need. I know a lot of people feel uncomfortable, don't know what to say to us, don't know what to do and want me to tell them what to do or what I need. Sometimes people seem to have problems knowing how to interact with us now. It's hard to find a balance between being empathetic and sympathetic and overbearing or maudlin or maybe it's the other extreme, feeling worried you might seem dismissive or uncaring if you don't talk enough about our plight. It's ok to not know what to say. Just know that we are grateful for all the support we have gotten and continue to get. Don't feel afraid to talk to us about it, but sometimes it's nice to talk about other things. You don't have to always ask how we are, because we don't really know if you really want to know or if the question is only being asked because it's socially appropriate. Ask how Theo is or just let us know you're thinking of us. Don't worry that we don't want to hear about your life or your worries, we do. Everything going on with the people we love is still important to us. Just please know that your love and support mean so much. And we thank you for it. This is a very pervasive thing for us, but the rest of the world doesn't stop because of our pain, even though it sometimes feels that it has. It's strange trying to live day to day and do normal things, have normal converstations. No matter what anyone says or does, or what I'm talking about or doing at any given moment, Theo is in my mind, my heart. My sadness right now pervades all my day to day activities, even when I smile or laugh, sadness is waiting. I know there is nothing that anyone can do to take it away. Sometimes I feel as though I will never be truly happy again. I feel different from everybody else, feel that I am irrevocably changed from who I was just a short time ago. I feel that surely everyone can tell, even the people at the bank or the grocery check out, that something is different about me. That I don't fit in with everyone else suddenly, that I am "other". Like grief and sadness are almost physical things that somehow everyone can see. I don't think that's really true, but it feels that way sometimes.
Jamie has opened the custodial account for Theo at Wachovia. If you want more information about it you can email me. We have had wonderful donations from the people we work with and from family members and friends and all that will go into Theo's account. Anthing sent to us will be put into Theo's account for his expenses and to help cover any expenses we may have if I or Jamie need to take any leave without pay.
We all send our love--
Karla, Jamie and Theo
We are both still getting used to having him here and are both dealing with all sorts of emotional ups and downs. It'll be that way for a while I imagine. Today is an ok day--not a good day--but an ok day for me. Theo is about the same all the time, now that we are getting his medications straight. He is on a good dose of morphine so that he is comfortable but not knocked out, we are learning how he is most comfortable, how he likes to be held, positioned, etc. He has times where he seems to feels pain or when he is agitated, for which he gets ativan as he needs it, but we are learning how to best calm him down and help him be soothed. He is mostly peaceful and content. We can tell he knows he is in a safe place, he senses who we are, he responds to our voices and touch, he knows he is loved. He loves to be held and cuddled, he likes to dance to music that he likes (especially Thelonious Monk, Miles Davis, Duke Ellington, a new cd of children's songs given to us by a friend of Jamie's), he responds to our love and care. All of these are good things. Jamie and I are getting used to the new Theo and the whole idea of how things are and how things will be as well as still dealing with the trauma of the last several weeks and the fear of the known and of the unknown. It'll take a while. In dealing with right now though, we luckily have strengths in very complimentary areas. He is better at knowing how to load and run all the pumps and machines, change the medication cassettes for the iv, measure out doses and keep the med schedule straight, note everything down, while all that makes me a little crazy, nervous and frustrated. And I am a little better at being comfortable holding, changing, bathing, comforting our new Theo, being ok while I am with him. Both of us are getting better at everything and are helping and supporting each other where we need help. I am so grateful to have him. He is a wonderful Daddy and my best friend. Most of the time you hear only about me through these posts; my thoughts and feelings. I don't say enough how wonderful Theo's father is. Theo is lucky to have such a loving, strong, reliable, giving, sweet man for his Daddy and so am I.
We are doing ok. I usually feel at a loss for what to tell people when they want to know what we need, because I don't really know what we need. I know a lot of people feel uncomfortable, don't know what to say to us, don't know what to do and want me to tell them what to do or what I need. Sometimes people seem to have problems knowing how to interact with us now. It's hard to find a balance between being empathetic and sympathetic and overbearing or maudlin or maybe it's the other extreme, feeling worried you might seem dismissive or uncaring if you don't talk enough about our plight. It's ok to not know what to say. Just know that we are grateful for all the support we have gotten and continue to get. Don't feel afraid to talk to us about it, but sometimes it's nice to talk about other things. You don't have to always ask how we are, because we don't really know if you really want to know or if the question is only being asked because it's socially appropriate. Ask how Theo is or just let us know you're thinking of us. Don't worry that we don't want to hear about your life or your worries, we do. Everything going on with the people we love is still important to us. Just please know that your love and support mean so much. And we thank you for it. This is a very pervasive thing for us, but the rest of the world doesn't stop because of our pain, even though it sometimes feels that it has. It's strange trying to live day to day and do normal things, have normal converstations. No matter what anyone says or does, or what I'm talking about or doing at any given moment, Theo is in my mind, my heart. My sadness right now pervades all my day to day activities, even when I smile or laugh, sadness is waiting. I know there is nothing that anyone can do to take it away. Sometimes I feel as though I will never be truly happy again. I feel different from everybody else, feel that I am irrevocably changed from who I was just a short time ago. I feel that surely everyone can tell, even the people at the bank or the grocery check out, that something is different about me. That I don't fit in with everyone else suddenly, that I am "other". Like grief and sadness are almost physical things that somehow everyone can see. I don't think that's really true, but it feels that way sometimes.
Jamie has opened the custodial account for Theo at Wachovia. If you want more information about it you can email me. We have had wonderful donations from the people we work with and from family members and friends and all that will go into Theo's account. Anthing sent to us will be put into Theo's account for his expenses and to help cover any expenses we may have if I or Jamie need to take any leave without pay.
We all send our love--
Karla, Jamie and Theo
Friday, September 23, 2005
No Place Like Home 9/22/2005
We're home now with Theo. This week has been very difficult. Having him home is infinitely better than the hospital, but being home with him now has come with it's own kind of sadness and anxiety. Home health people and nurses have been in and out and it's been good to have help, but it's just so different than it used to be. It feels strange having people in and out, having this equipment around, having all these new things in place; medicine schedule, feeding schedule, the maintenance of the iv antibiotic pump, operating the feeding pump, medicine bottles crowding the kitchen counter; and seeing my baby lying there, barely moving, hooked to tubes in our own home, all of this constantly reminds me of how painfully different our lives are now. And the pain that comes from thinking of all the things that will never be feels sometimes too much to bear--no more holding him close to feed (although I am still pumping as much breastmilk as I can), no more smiles and playful times, no watching him grow up, sit up, roll over, crawl around, walk. No trips to see the ocean for the first time, no King's Dominion, no swingset, no explaining why the sky is blue or cleaning up thrown food or messes from playing. I don't want to dwell on the sadness or feel sorry for myself, but sometimes I find it very difficult to remain in the present and not be pulled to the past or to a future that will never exist. I do love being able to hold him and take care of him myself. It is so nice not being at the hospital anymore. But I recognize that we are already in the grieving process, grieving a life we won't have with Theo, greiving the happiness we had before the tumor made itself known.
Theo is doing well. He seems more comfortable since our home health nurse Sherri noticed yesterday that he seemed in more pain when we move him around and she recommended we call and have his morphine adjusted, so now he gets doses three hours apart and seems more comfortable. We had been saying this for a while. It's nice to have our observatios validated by someone else.
He looks beautiful when he sleeps. If he didn't have the ng tube, he would look just like his old self. Sleeping with arms thrown out to the sides looking peaceful and content. We are doing our best to cope and stay as positive as we can, enjoying as much as we can the time we have with him. It's very hard to go to work, to leave Theo and Jamie--and I know Jamie feels the same way when he has to leave us to go to campus to teach.
Sorry I am not more upbeat today. I feel just so incredibly sad.
Thank you all for your continued love, support and prayers. People have asked what we need--it's so hard right now to even recognize what we need, much less ask for it. I know it has been helpful when people have helped clean the house, dropped off dinners or particilarly things we can keep in the freezer and unthaw for quick meals, gift certificates for foods. We could both use a massage. Neither of us ever wants to leave or would do that on our own, but if we had gift certificates we would use them. Little things people have done for us, such as dropping things by like foods or bottles of wine. It is very hard to think of things that we need or want. Money has been very helpful. We are in the process of opening a custodial account for him through Wachovia (where we both have accounts) so we will have that money set aside for bills, expenses the insurance won't pay (they pay about 80%), or future expenses. We will put all the money already so generously donated by our co-workers and friends and family into that account. Any other money we get for Theo will go into the account as well.
We have so much to get used to and to keep track of right now in taking care of Theo's needs that it's hard to focus on our own. Thank you all for everything you've done to help us. Please continue to think of us and send us prayers and good wishes.
I will check in soon.
Love,
Karla
Theo is doing well. He seems more comfortable since our home health nurse Sherri noticed yesterday that he seemed in more pain when we move him around and she recommended we call and have his morphine adjusted, so now he gets doses three hours apart and seems more comfortable. We had been saying this for a while. It's nice to have our observatios validated by someone else.
He looks beautiful when he sleeps. If he didn't have the ng tube, he would look just like his old self. Sleeping with arms thrown out to the sides looking peaceful and content. We are doing our best to cope and stay as positive as we can, enjoying as much as we can the time we have with him. It's very hard to go to work, to leave Theo and Jamie--and I know Jamie feels the same way when he has to leave us to go to campus to teach.
Sorry I am not more upbeat today. I feel just so incredibly sad.
Thank you all for your continued love, support and prayers. People have asked what we need--it's so hard right now to even recognize what we need, much less ask for it. I know it has been helpful when people have helped clean the house, dropped off dinners or particilarly things we can keep in the freezer and unthaw for quick meals, gift certificates for foods. We could both use a massage. Neither of us ever wants to leave or would do that on our own, but if we had gift certificates we would use them. Little things people have done for us, such as dropping things by like foods or bottles of wine. It is very hard to think of things that we need or want. Money has been very helpful. We are in the process of opening a custodial account for him through Wachovia (where we both have accounts) so we will have that money set aside for bills, expenses the insurance won't pay (they pay about 80%), or future expenses. We will put all the money already so generously donated by our co-workers and friends and family into that account. Any other money we get for Theo will go into the account as well.
We have so much to get used to and to keep track of right now in taking care of Theo's needs that it's hard to focus on our own. Thank you all for everything you've done to help us. Please continue to think of us and send us prayers and good wishes.
I will check in soon.
Love,
Karla
Tuesday, September 20, 2005
9/20/05 'Round Midnight 12:16 a.m.
Theo is sleeping inhis own crib for the very first time. He has slept in the bassinet next to our bed until tonight. We got home around 3:00 p.m. Nobody was here to meet us. Jamie went to pick up all Theo's prescriptions and I stayed with him. I was very anxious, nervous and worried. I called all the companies involved and in about 30 minutes started getting phone calls from the people driving to the house. First the food supply company Praxair showed up with his feeding pump, bags, and formula. She showed us how to load the formula into the bags, thread the tubing, and run the machine. They sent the wrong formula and the wrong sized syringes to flush his tubing. They hadn't gotten the message that he needs formula concentrate and not ready to use. He has to have the concentrate because right now he is getting a mixture with less water to ensure higher calorie feedings with less volume (he was spitting up due to too much food in his belly). We got it all straight and luckily we had samples of the formula from the hospital and we can also use the powdered forumula we have already if we need to. It wasn't that hard to learn to set up and run the pump, it was just the unreality of the whole experience. It was really hard for me to concentrate on everything she was saying. After she showed up, the man from Bon Secours came with our antibiotic pump and all the accompanying supplies for that. He didn't stay long, but did have several paperwork pieces for me to sign as did the lady from Praxair. Then our very nice and helpful social worker, Dawn, from Noah's Children (not Noah's Ark as I said before) came and really did help me to feel a little better about the whole situation. The others left and we were trying to figure out his medicines. We gave his 5:00 p.m. meds and then our home health nurse Sherri showed up. She stayed for over two hours going over his medicines with us, teaching us about running the IV antibiotic pump and again filling out loads of paperwork. I thought I was going to scream before it was all over. It was so much information in such a short period of time and under such stressful conditions.
Today was really hard for me. I am really glad to have him home, but there is also a new kind of sadness as well. All I can think of are the times we had at home before all this happened. It's all so very different now. It's all so surreal. I feel so sad and heavy hearted. We are doing our best. I think it going to take us time to adjust to this new way of being a family. Tomorrow Jamie teaches his classes and I am staying home with Theo. The next day I go bnack to work and Jamie will stay with Theo. I hope we will all have good days together.
I'll keep you posted on how it's going. I will most likely not post every day, I'll shoot for every two days or so. Check in regularly and scroll down to be sure you don't miss any messages.
Please keep praying for us and keep us in your thoughts.
Love,
Karla
Today was really hard for me. I am really glad to have him home, but there is also a new kind of sadness as well. All I can think of are the times we had at home before all this happened. It's all so very different now. It's all so surreal. I feel so sad and heavy hearted. We are doing our best. I think it going to take us time to adjust to this new way of being a family. Tomorrow Jamie teaches his classes and I am staying home with Theo. The next day I go bnack to work and Jamie will stay with Theo. I hope we will all have good days together.
I'll keep you posted on how it's going. I will most likely not post every day, I'll shoot for every two days or so. Check in regularly and scroll down to be sure you don't miss any messages.
Please keep praying for us and keep us in your thoughts.
Love,
Karla
Sunday, September 18, 2005
Last Day 9/18/05
Today is our last day here--we are counting down the hours. So far the doctors are continuing to say that everything looks good for going home tomorrow. They say around noon, so that really means about 4:00 p.m. And things tend to change quickly around here. I'm just hoping that nothing will prevent our leaving tomorrow. We are very excited about having him home with us.
Theo is doing well (except he really needs to poo--he is a little constipated--he's getting stuff to help him go). He is asleep right now and looking very peaceful. He looks like he is dreaming, little eyes nmoving around, mouth moving. I wonder what he is dreaming of; I hope beautiful things. Maybe he is dreaming of being home.
We have been learning how to do everything we will need to do at home. I took out his ng tube yesterday and put a new one in. It wasn't as difficult as I thought it would be. The tube needs to be changed once a month. We have both practiced changing his dressing on his Hickman which gets done once a week. We have both also given him all his medicines through his tube yesterday and today. So with the home health support, we should be ok. They will meet us tomorrow when we get home to help us hook up his IV drip for the antibiotics, teach us how to use the pump for the antibiotics and the feeding pump. We haven't learned those things in the hospital because they aren't certain we will be using the same equipment they have here, so we are just waiting to learn on the ones we'll be using. We will have very good support from the Noah's Ark people, nurses, volunteers, social workers, etc. I think they are there as much or as little as we need. They will deliver all his medicines and supplies to us and make sure we have what we need for his care. They also have therapists, support groups and clergy people for mental health and spiritual support as well.
We are both really happy that Theo will be home with us. I know he will be more comfortable and so will we. After his course of antibiotics is done--in about a week or so, he won't be hooked up to anything except for when he is feeding so we will be able to walk around with him, hold him whenever we want, go for walks in the stroller, rides in the car, go out anywhere we want with him. It will feel so much better and more normal. We are also glad that people will be able to visit us at home instead of here. I am so thankful for all the wonderful support we have gotten and continue to get from all our friends and family.
I will continue to post about Theo's adventures and how we are all doing.
We love you all--
Karla
P.S ---Happy birthday Mommie! I love you.
It's my mom's birthday today :-)
Theo is doing well (except he really needs to poo--he is a little constipated--he's getting stuff to help him go). He is asleep right now and looking very peaceful. He looks like he is dreaming, little eyes nmoving around, mouth moving. I wonder what he is dreaming of; I hope beautiful things. Maybe he is dreaming of being home.
We have been learning how to do everything we will need to do at home. I took out his ng tube yesterday and put a new one in. It wasn't as difficult as I thought it would be. The tube needs to be changed once a month. We have both practiced changing his dressing on his Hickman which gets done once a week. We have both also given him all his medicines through his tube yesterday and today. So with the home health support, we should be ok. They will meet us tomorrow when we get home to help us hook up his IV drip for the antibiotics, teach us how to use the pump for the antibiotics and the feeding pump. We haven't learned those things in the hospital because they aren't certain we will be using the same equipment they have here, so we are just waiting to learn on the ones we'll be using. We will have very good support from the Noah's Ark people, nurses, volunteers, social workers, etc. I think they are there as much or as little as we need. They will deliver all his medicines and supplies to us and make sure we have what we need for his care. They also have therapists, support groups and clergy people for mental health and spiritual support as well.
We are both really happy that Theo will be home with us. I know he will be more comfortable and so will we. After his course of antibiotics is done--in about a week or so, he won't be hooked up to anything except for when he is feeding so we will be able to walk around with him, hold him whenever we want, go for walks in the stroller, rides in the car, go out anywhere we want with him. It will feel so much better and more normal. We are also glad that people will be able to visit us at home instead of here. I am so thankful for all the wonderful support we have gotten and continue to get from all our friends and family.
I will continue to post about Theo's adventures and how we are all doing.
We love you all--
Karla
P.S ---Happy birthday Mommie! I love you.
It's my mom's birthday today :-)
Friday, September 16, 2005
9/16/05
Some good news! Theo will be coming home Monday afternoon.
We are going to try to find time to clean up the house this weekend. I will clean out his pack-n- play this weekend sometime and finish getting his room together. He has been sleeping in his bassinet by our bed, but I think he has grown so much in the month we have been here that I don't even know if he will fit in it anymore! Plus, we will have his equipment for feeding and medications and he will need to be propped up some as he sleeps, so I think that he will need to start using his crib when we get home. I have been keeping lots of his clothes and and some other things in the bassinet part of the pack-n-play and using the contoured changing space for naps and such, but I think he is going to need all that space in the bassinet so I'll need to get all that straight. I also need to find a wedge pillow so he can sit up some as he rests. The home health people (from Bon Secours) will come to the house to teach us how to operate the feeding pump and medication stuff and will come by periodically--I think once a week--to check the equipment.
We will need to give him all his medications and feedings through his ng (nasal-gastro) tube. He won't have to get the g-tube in his stomach since he is not on chemo anymore. The main concern with that was that ng tubes, which run through the nose, down the throat and into the belly, can cause irritation of the nasal passages. With the suppressed immune system caused by the chemotherapy, a small irritation like that could easily lead to a sinus infection. But now that is not a concern. His ng tube will just need to be changed monthly. It's very easy to check for correct placement of the tube and use it for feedings and medicines.
He is on morphine every four hours and ativan prn (as needed) for agitation and irritability as well as any pain he might be experiencing. The doctors don't really agree on whether he should be or can be feeling pain, but to us (and many of the nurses) he appears to be in pain some of the time. Sometimes he just seems really irritated or mad, but neither of us (nor the nurses) can stand to see him upset like that, so we choose to give him the medications. We will give him all his medicine and feedings at home, and luckily, he will be getting most everything though the ng tube, some things through the Hickman. Once his antibiotics are done, he won't be on a constant drip iv so we can unhook all the tubes, hold him easily, take him for walks and rides, etc. It will feel so much more normal. As long as he is as comfortable and as happy as he can be, that is all that matters to me. We are really glad he is going to be coming home. I think he will feel much more relaxed and comfortable in his home environment. We will also be getting support from an organization called Noah's Ark Children's Health and Hospice Care for kids with chronic and terminal illnesses. Their nurses will come in at least once a week to help us with the medical aspecets and they will be providing services for psycho-social needs with social workers, support groups, volunteers, etc. We've been here almost a month. Monday, when we are scheduled to leave will be the 30th day. It's kind of appropriate that the Health and Hospice care is called Noah's Ark considering we've been through quite a storm for 30 days and 30 nights. I believe miracles can happen, but I also have to proceed in the way that we are. I can't put him through the trauma of chemo with things the way they are now. I feel incredible sadness, but also a sense of peace. We want Theo to be happy, peaceful, loved, at ease and comfortable. We want all the time we have with him to be joyful. We can't avoid feeling sadness, but we also feel so grateful to have been given the wonderful gift of Theo. So much of my strength and ability to handle this has come from my love for Theo and his for me. Much of it has also come from all of you, your prayers, positive energy, love and support gives us all strength. Thank you all so much for everything you have done and continue to do. We will continue to need your support after we get him home.
I also wanted to let you all know that so far, it doesn't appear that the infection is in the shunt but rather in the central line (the Hickman). The CSF fulid they drew has not grown a culture in 24 hours. They will check it again in another 24 hours, but they are thinking that it is probably not in the shunt. Antibiotics are continuing for 10 more days which will clear up the infection in the line.
I will continue, of course, to keep you updated and try to post more pictures of Theo for everyone to look at. Everyone who was thinking about visiting the hospital, we would love for you to wait till we get him home and visit us there. We are really tired of the hospital and will be very glad to be able to have people see us and Theo in our own home.
Love and kisses,
Karla
We are going to try to find time to clean up the house this weekend. I will clean out his pack-n- play this weekend sometime and finish getting his room together. He has been sleeping in his bassinet by our bed, but I think he has grown so much in the month we have been here that I don't even know if he will fit in it anymore! Plus, we will have his equipment for feeding and medications and he will need to be propped up some as he sleeps, so I think that he will need to start using his crib when we get home. I have been keeping lots of his clothes and and some other things in the bassinet part of the pack-n-play and using the contoured changing space for naps and such, but I think he is going to need all that space in the bassinet so I'll need to get all that straight. I also need to find a wedge pillow so he can sit up some as he rests. The home health people (from Bon Secours) will come to the house to teach us how to operate the feeding pump and medication stuff and will come by periodically--I think once a week--to check the equipment.
We will need to give him all his medications and feedings through his ng (nasal-gastro) tube. He won't have to get the g-tube in his stomach since he is not on chemo anymore. The main concern with that was that ng tubes, which run through the nose, down the throat and into the belly, can cause irritation of the nasal passages. With the suppressed immune system caused by the chemotherapy, a small irritation like that could easily lead to a sinus infection. But now that is not a concern. His ng tube will just need to be changed monthly. It's very easy to check for correct placement of the tube and use it for feedings and medicines.
He is on morphine every four hours and ativan prn (as needed) for agitation and irritability as well as any pain he might be experiencing. The doctors don't really agree on whether he should be or can be feeling pain, but to us (and many of the nurses) he appears to be in pain some of the time. Sometimes he just seems really irritated or mad, but neither of us (nor the nurses) can stand to see him upset like that, so we choose to give him the medications. We will give him all his medicine and feedings at home, and luckily, he will be getting most everything though the ng tube, some things through the Hickman. Once his antibiotics are done, he won't be on a constant drip iv so we can unhook all the tubes, hold him easily, take him for walks and rides, etc. It will feel so much more normal. As long as he is as comfortable and as happy as he can be, that is all that matters to me. We are really glad he is going to be coming home. I think he will feel much more relaxed and comfortable in his home environment. We will also be getting support from an organization called Noah's Ark Children's Health and Hospice Care for kids with chronic and terminal illnesses. Their nurses will come in at least once a week to help us with the medical aspecets and they will be providing services for psycho-social needs with social workers, support groups, volunteers, etc. We've been here almost a month. Monday, when we are scheduled to leave will be the 30th day. It's kind of appropriate that the Health and Hospice care is called Noah's Ark considering we've been through quite a storm for 30 days and 30 nights. I believe miracles can happen, but I also have to proceed in the way that we are. I can't put him through the trauma of chemo with things the way they are now. I feel incredible sadness, but also a sense of peace. We want Theo to be happy, peaceful, loved, at ease and comfortable. We want all the time we have with him to be joyful. We can't avoid feeling sadness, but we also feel so grateful to have been given the wonderful gift of Theo. So much of my strength and ability to handle this has come from my love for Theo and his for me. Much of it has also come from all of you, your prayers, positive energy, love and support gives us all strength. Thank you all so much for everything you have done and continue to do. We will continue to need your support after we get him home.
I also wanted to let you all know that so far, it doesn't appear that the infection is in the shunt but rather in the central line (the Hickman). The CSF fulid they drew has not grown a culture in 24 hours. They will check it again in another 24 hours, but they are thinking that it is probably not in the shunt. Antibiotics are continuing for 10 more days which will clear up the infection in the line.
I will continue, of course, to keep you updated and try to post more pictures of Theo for everyone to look at. Everyone who was thinking about visiting the hospital, we would love for you to wait till we get him home and visit us there. We are really tired of the hospital and will be very glad to be able to have people see us and Theo in our own home.
Love and kisses,
Karla
Wednesday, September 14, 2005
9/14/05
We got the results of the MRI today and had a meeting with our neurosurgeon Dr. Ward, our oncologist Dr. Dunn and neurologist Dr. Shapiro. The MRI shows extensive damage to the cerebral cortex. Theo is severely brain damaged. The damage occurred from the original bleed of the tumor. Remember that the initial surgery to remove the tumor occurred as an emergency surgery after a very significant change in his pupils was noticed. That was the very first post/email. That bleed caused this damage which was not apparent until now. After that first surgery, they showed us on a follow up scan where there were some darker gray areas in the brain (healthy tissue shows up as very bright gray/white) and told us then that these gray areas might be stroke, blood, damage, or just swelling, it was too early to tell. I held out for swelling or for very minimal damage that would eventually correct itself, but not cause a lot of long term problem for him. I was wrong. They are unable to tell me exactly what type of functioning level he might be able to have. Mainly because he's so young and had not reached any real developmetnal milestones yet anyway. Also because the young brain is so changeable, it's hard to say what he may or may not do. He may never do anything more than he is doing right now--lying in bed doing baby stuff, pretty much at a 1 month or newborn level; except he is not sucking and probably will not ever be able to eat without a tube. He may eventually gain a small amount of function, maybe sitting up, maybe grasping--we don't know and neither do the doctors. It's very doubtful that he will walk or talk or have significant relationships. In light of all this, we have decided to discontinue the chemotherapy. We don't want to put him through that stress. In three months or so (this was the time period suggested by the doctors) we will take another look and see whether the tumor has come back and then do palliative care, keeping him as comfortable as possible.
Another issue that is more immediate is that he has developed an infection. They do periodic blood cultures on all people with these Hickman lines to check for infection. If the infection is in the central line (the Hickman), which is very common in people who have them, it is easily taken care of. He is already on antibiotics. If the infection is in the shunt, we will have to make more decisions about his care. The treatment for an infection in a shunt is another brain surgery to remove the shunt and then to place another one on the other side of the brain. Or we can choose to forgo the stress of the treatment. The infection would develop into a case of ventriculitis (infection of the ventricles) which would lead to death. We have decided that if the infection is in the shunt we will most likely not pursue the treatment. We want Theo to be in no pain and to be as comfortable as we can possibly help him to be.
I know this is very hard to read, very hard to wrap your mind around. I am so sorry to have to tell you all this news. I am heartbroken and feel more sadness than I thought would be possible in my lifetime. But I do feel more at peace than I felt yesterday or even earlier today. Jamie feels the same way. We need all your prayers for strength and peace. Theo needs your love and good thoughts.
I will continue to keep you posted about the infection and on anything new that happens.
We love you all--
Karla, Jamie and Theo
Another issue that is more immediate is that he has developed an infection. They do periodic blood cultures on all people with these Hickman lines to check for infection. If the infection is in the central line (the Hickman), which is very common in people who have them, it is easily taken care of. He is already on antibiotics. If the infection is in the shunt, we will have to make more decisions about his care. The treatment for an infection in a shunt is another brain surgery to remove the shunt and then to place another one on the other side of the brain. Or we can choose to forgo the stress of the treatment. The infection would develop into a case of ventriculitis (infection of the ventricles) which would lead to death. We have decided that if the infection is in the shunt we will most likely not pursue the treatment. We want Theo to be in no pain and to be as comfortable as we can possibly help him to be.
I know this is very hard to read, very hard to wrap your mind around. I am so sorry to have to tell you all this news. I am heartbroken and feel more sadness than I thought would be possible in my lifetime. But I do feel more at peace than I felt yesterday or even earlier today. Jamie feels the same way. We need all your prayers for strength and peace. Theo needs your love and good thoughts.
I will continue to keep you posted about the infection and on anything new that happens.
We love you all--
Karla, Jamie and Theo
Tuesday, September 13, 2005
9/13/05
Sorry I didn't get to post yesterday. Theo has been experiencing some agitation and is taking Ativan to help with that. It seems to work well and he is resting comfortably right now. We are waiting for the results of an MRI we had done today to follow up a CT scan yesterday. The scan yesterday showed enlargement of the ventricles and the nurses pumped the shunt to relieve any extra pressure. As we get more information we will let you know. We have a meeting scheduled with neurology, oncology and the neuro suergeons tomorrow to discuss the whole case from each team's perspective, how he is doing over all, when he might go home, and what the plans for the future may be, etc.
Please continue to pray for Theo and for us, particularly for strength for us.
Love,
Karla
Please continue to pray for Theo and for us, particularly for strength for us.
Love,
Karla
Sunday, September 11, 2005
New Room 9/11/05
Today is a much better day than yesterday. We are all very tired today, especially little Theo. He is sleeping now. He has been awake and calm today for a few hours, which is significant. Yesterday, if he was awake, he was crying and clearly in pain. He seems much better today. I don't have to wear gloves anymore to change his diaper. The really toxic period is over.
Today he gets a new drug --I can't remember the whole name but they call it G-factor--it helps grow new cells in the bone marrow which will help keep his blood count up and strengthen his immune system. We will have to give it at home as well. We will also give the mesna (the rescue drug/vitamin he got every three hours for 24 hours following chemo yesterday) so he won't have to spend so much time in clinic for his outpatient treatments. I am very happy that he is feeling better today. He is having a good day today.
We are now in 7-Central West. Still on the 7th floor, but no longer in Intensive Care. Most of the nurses in Central (and all our nurses) are certified in Chemotherapy, which even our nurses in the PICU are not. The oncologists want all the chemo kids in one place. We still have a private room. It's a little smaller, but nice. Even though we obviously don't get the same intensity of care, our nurses have been very good, and I am happy with the floor. As long as we don't have to go to the "East side" (which is my name for 7-East). We had a very bad experience over there where we spent one night before he had to have his shunt put in. I'm pretty sure nobody would have noticed that his ventric tube site was leaking if I hadn't said something. Anyway--we are focusing on the positive and I'm happy with our nurses and the care he is getting. Our room is 7-222 and for those of you who have the phone number, the new number is the same except the last two digits are now 46.
If you want the number and don't have it, email me and I'll send it to you. I expect that we will be in this room till he comes home, hopefully by Friday. No one has told me that, it's just the day I have in my head for some reason. We don't know exactly when he will be discharged.
Keep up the good thoughts and prayers--
I'll update you tomorrow.
Love to all--
Karla
Today he gets a new drug --I can't remember the whole name but they call it G-factor--it helps grow new cells in the bone marrow which will help keep his blood count up and strengthen his immune system. We will have to give it at home as well. We will also give the mesna (the rescue drug/vitamin he got every three hours for 24 hours following chemo yesterday) so he won't have to spend so much time in clinic for his outpatient treatments. I am very happy that he is feeling better today. He is having a good day today.
We are now in 7-Central West. Still on the 7th floor, but no longer in Intensive Care. Most of the nurses in Central (and all our nurses) are certified in Chemotherapy, which even our nurses in the PICU are not. The oncologists want all the chemo kids in one place. We still have a private room. It's a little smaller, but nice. Even though we obviously don't get the same intensity of care, our nurses have been very good, and I am happy with the floor. As long as we don't have to go to the "East side" (which is my name for 7-East). We had a very bad experience over there where we spent one night before he had to have his shunt put in. I'm pretty sure nobody would have noticed that his ventric tube site was leaking if I hadn't said something. Anyway--we are focusing on the positive and I'm happy with our nurses and the care he is getting. Our room is 7-222 and for those of you who have the phone number, the new number is the same except the last two digits are now 46.
If you want the number and don't have it, email me and I'll send it to you. I expect that we will be in this room till he comes home, hopefully by Friday. No one has told me that, it's just the day I have in my head for some reason. We don't know exactly when he will be discharged.
Keep up the good thoughts and prayers--
I'll update you tomorrow.
Love to all--
Karla
Saturday, September 10, 2005
Chemo Day 9/10/05
This has been one of the hardest days for me so far. The first few days were a nightmare--the beginning of everything, "De beby has blood on de braien. We are sending to MCV to see pediatrric neurosurgeon"--then--"It's a tumor, ok..."--and after that the emergency surgery and the waiting through the surgery. All that was bad. And hard. And then everything in between, a little something almost every day-- a midnight ventriculostomy, swelling, fevers, high ICPs, needle sticks over and over, seizures, repeated EEGs, CTs, MRIs, leaky head, sewing it up, leaking, sewing it up, get a shunt, a Hickman, surgery, etc., etc.,--
But this day has been, is still, totally heartbreaking. To watch the poison medicine going through the tubes into my baby's small body, knowing that this is the only choice we have, that to be certain the cancer is killed, he must endure this, and to see it happen, to stand there and be able to do nothing but watch was just heartbreaking. Our chemo nurse said that this was a good day. That it was a day his healing starts. And I said, "Then why do I feel so sad?" She told me a lot of parents feel this way on the first chemotherapy day. She said it makes it seem real. Yes. It seemed very real. To a bystander, it was fairly anticlimactic, jsut more fluids from syringes pumped through the tube, but to us, it was something else entirely.
It seems like just some more medicine, crystal clear and in a syringe, looking like so many of the others, but it's not. This is the chemo. This is vincristine and cytoxan. Group A1. The nurse, specially trained just for this, wears double gloves. The bed is draped with protective covering all around, in case the medicines leak out somehow. The vincristine, made from the innocent looking periwinkle flower, is so toxic that if it reaches the skin it will burn and blister where it touches almost immediately. The cytoxan makes the lining of the bladder hemmorhage. He must have a "rescue medicine" called mesna every three hours for 24 hours to prevent this from happening. The mesna coats the lining of the bladder protecting it from the poisonous effects of the drugs that may be this very instant saving his life. He is given fluids all throughout the day to chase the drug out of the system as soon as it does its work. His diaper must be changed every two hours to ensure that cytoxan and vincristine laced urine does not damage his delicate skin. For the next 24 hours we must wear gloves while changing him. If his tears, saliva, or other body fluids touch our skin, we must wash our hands as soon as possible. His body fluids are toxic and if left on our skin will be absorbed into our bodies. These medicines given him today cause hair loss, jaw pain, stomach pain, nausea, and may cause vomiting.
He has been very uncomfortable all day. He was given Tylenol and Zofran, a powerful anti-nausea medicine that the oncologists and the chemo nurses have told me is a "miracle drug", before starting the chemo and has received both of those several times since. The chemo drugs themselves were started at 11:00 a.m. and were finished by noon. The rest of the day has been fluid delivery, mesna every three hours and zofran, Tylenol every four hours or so. He has received morphine a couple times and benedryl to help him sleep. He has whimpered and cried and made "help me" noises nearly every waking minute and has coughed a few times (possibly signaling nausea) but he has not thrown up. It has been wrenchingly painful to watch him in pain, to see him visibly uncomfortable, inconsolable and not know exactly what is hurting, how bad it's hurting, what I can do at all to help him. He can't tell me what hurts or how he feels or what he needs or what might make him feel a little better, if anything. He napped for about 3 hours this afternoon and roughly an hour or so this evening around 8:00. He is sleeping now, it's about 11:30 p.m. A little more than 12 hours since the chemo began. His little body is working so hard to fight cancer and to get the chemo out of his system at the same time. He finally fell asleep at about quarter till eleven and I came in here to post. After I finish, here I will go check on him and I pray he is still sleeping. When he is asleep he seems to be pain free and at peace. Tomorrow, I hope will be better than today. I hope he will feel a little better and then a little better still the next day and the next. Then we will start over on day 8 of the treatment with these same two drugs. And do it all again.
Please continue to pray for him and for us. My heart feels broken tonight. I know Jamie is devastated. How my heart can feel so broken and so full of love at the same time, I don't know. I read a quote once, I can't remember by who, that said something like, "The heart is made to be broken. Once it breaks it can expand to allow ever more beauty inside".
I have nothing left to say tonight, except please keep us in your hearts and minds and continue as my cousin Penni said, "to pray without ceasing".
Love,
Karla
But this day has been, is still, totally heartbreaking. To watch the poison medicine going through the tubes into my baby's small body, knowing that this is the only choice we have, that to be certain the cancer is killed, he must endure this, and to see it happen, to stand there and be able to do nothing but watch was just heartbreaking. Our chemo nurse said that this was a good day. That it was a day his healing starts. And I said, "Then why do I feel so sad?" She told me a lot of parents feel this way on the first chemotherapy day. She said it makes it seem real. Yes. It seemed very real. To a bystander, it was fairly anticlimactic, jsut more fluids from syringes pumped through the tube, but to us, it was something else entirely.
It seems like just some more medicine, crystal clear and in a syringe, looking like so many of the others, but it's not. This is the chemo. This is vincristine and cytoxan. Group A1. The nurse, specially trained just for this, wears double gloves. The bed is draped with protective covering all around, in case the medicines leak out somehow. The vincristine, made from the innocent looking periwinkle flower, is so toxic that if it reaches the skin it will burn and blister where it touches almost immediately. The cytoxan makes the lining of the bladder hemmorhage. He must have a "rescue medicine" called mesna every three hours for 24 hours to prevent this from happening. The mesna coats the lining of the bladder protecting it from the poisonous effects of the drugs that may be this very instant saving his life. He is given fluids all throughout the day to chase the drug out of the system as soon as it does its work. His diaper must be changed every two hours to ensure that cytoxan and vincristine laced urine does not damage his delicate skin. For the next 24 hours we must wear gloves while changing him. If his tears, saliva, or other body fluids touch our skin, we must wash our hands as soon as possible. His body fluids are toxic and if left on our skin will be absorbed into our bodies. These medicines given him today cause hair loss, jaw pain, stomach pain, nausea, and may cause vomiting.
He has been very uncomfortable all day. He was given Tylenol and Zofran, a powerful anti-nausea medicine that the oncologists and the chemo nurses have told me is a "miracle drug", before starting the chemo and has received both of those several times since. The chemo drugs themselves were started at 11:00 a.m. and were finished by noon. The rest of the day has been fluid delivery, mesna every three hours and zofran, Tylenol every four hours or so. He has received morphine a couple times and benedryl to help him sleep. He has whimpered and cried and made "help me" noises nearly every waking minute and has coughed a few times (possibly signaling nausea) but he has not thrown up. It has been wrenchingly painful to watch him in pain, to see him visibly uncomfortable, inconsolable and not know exactly what is hurting, how bad it's hurting, what I can do at all to help him. He can't tell me what hurts or how he feels or what he needs or what might make him feel a little better, if anything. He napped for about 3 hours this afternoon and roughly an hour or so this evening around 8:00. He is sleeping now, it's about 11:30 p.m. A little more than 12 hours since the chemo began. His little body is working so hard to fight cancer and to get the chemo out of his system at the same time. He finally fell asleep at about quarter till eleven and I came in here to post. After I finish, here I will go check on him and I pray he is still sleeping. When he is asleep he seems to be pain free and at peace. Tomorrow, I hope will be better than today. I hope he will feel a little better and then a little better still the next day and the next. Then we will start over on day 8 of the treatment with these same two drugs. And do it all again.
Please continue to pray for him and for us. My heart feels broken tonight. I know Jamie is devastated. How my heart can feel so broken and so full of love at the same time, I don't know. I read a quote once, I can't remember by who, that said something like, "The heart is made to be broken. Once it breaks it can expand to allow ever more beauty inside".
I have nothing left to say tonight, except please keep us in your hearts and minds and continue as my cousin Penni said, "to pray without ceasing".
Love,
Karla
Friday, September 09, 2005
Slow day 9/9/05
Not much happening today. He is resting calmly. He will start chemo tomorrow and get a dose Saturday, Sunday and Monday I believe. Dr. Massey told me it would be over a three day period so I'm guessing he will get a small amount each day. They will observe him and give lots of fluids as well. After that he gets a dose of the A1 medicines once a week until week 5 then they will switch to A2. Then it's every other week till they switch to the B group which are the really toxic ones. He will spend 24 hours in the hospital for that one. I am getting ready to head over there right now. I expect a quiet evening.
The neurologist told Jamie that she saw no lesions on his spine, or anything out of the ordinary, from the MRI yesterday evening, but that the oncology department would be looking at it more closely and give us a more thorough reading. I continue to believe that he will have no spinal problems. They only did MRI of the spine, not the brain, so there will probably be another MRI over the next few days, maybe Monday, for the neuro-surgeons and oncologists to check out the brain and the tumor and shunt sites.
His vision is getting better daily. Even though I have been seeing daily improvement in small increments, the neurologists have just agreed with me that he is tracking (following objects with his eyes as they move from side to side or around the room) and focusing for brief periods. This is very positive. He is getting a little better every day. We are now cheering on his sucking and swallowing abilities as well. Keep praying for improvements in those areas.
Also continue to pray and think good thoughts as we start the chemo journey tomorrow.
Love,
Karla
The neurologist told Jamie that she saw no lesions on his spine, or anything out of the ordinary, from the MRI yesterday evening, but that the oncology department would be looking at it more closely and give us a more thorough reading. I continue to believe that he will have no spinal problems. They only did MRI of the spine, not the brain, so there will probably be another MRI over the next few days, maybe Monday, for the neuro-surgeons and oncologists to check out the brain and the tumor and shunt sites.
His vision is getting better daily. Even though I have been seeing daily improvement in small increments, the neurologists have just agreed with me that he is tracking (following objects with his eyes as they move from side to side or around the room) and focusing for brief periods. This is very positive. He is getting a little better every day. We are now cheering on his sucking and swallowing abilities as well. Keep praying for improvements in those areas.
Also continue to pray and think good thoughts as we start the chemo journey tomorrow.
Love,
Karla
Thursday, September 08, 2005
9/08/05 Tests Today
Theo is having an EEG right now--he is not happy about all the people putting things all over his head. The EEG will take about 40 minutes and is just to check on seizure activity (which I don't expect the will see), so they can start tapering off the phenobarbitol that he is still on. Later tonight he will have an MRI--around 6:00 p.m.-- of his head and spine to check to be sure that there are no lesions on the spine. Because this cancer grows in the ventricles where the cerebral spinal fluid (CSF) is made and flows around the brain and spine, sometimes cells migrate to the spinal area. But again, I expect good results from the test and to hear that his spine looks wonderful. Other than those two things, nothing else is happening until chemo starts. There is nothing scheduled for tomorrow. I talked to Dr. Massey (one of our oncologists) this morning and she said it would be fine to start the chemo on Saturday instead of Friday. I am working tomorrow and did not want to miss the beginning of chemotherapy. She said that they will bring the chemo to him and do the drip in his room on the PICU. The nurse practitioner with her said that it will be fairly anti-climactic, but I don't care. I don't want to miss the first doses of chemo. After we get on a regular schedule and it becomes more routine, I won't have to be there every time, Jamie can come on his own, but until then, I want to be there with him. It's sad and a little scary to know that after a few months, it will be routine and almost normal to take my baby to have chemo. Not, of course, if I sit and really focus on the thought, it will never really feel normal, but it's amazing what you get used to. We've been here so long now that a lot of this hospital stuff--knowing the equipment, the schedule, the jargon, the nurses, the different groups of doctors, their routines, the cafeteria schedule, the gift shop hours, the security gaurds, etc. --are all normal things to me now.
Anyway--please keep praying and meditating and sending positive energy and thoughts. It never gets so normal that I stop praying. I just told a friend of ours that there are people from every spiritual tradition--and all over the world-- praying, meditating, focusing on Theo's healing and for support and strength for us. It is really wonderful.
For all the people out there who like to know specific things to pray for, please pray that he will get through his chemo without getting sick, pray that he will not contract any illnesses or infections (chemo makes your white blood count very low and therefore your immune system low--a cold can easily turn into pneumonia), pray that there be no cancer cells in his body--in his brain, on his spine, anyplace at all, that there be no damage to him at all as a result of the tumor or surgery or chemotherapy, and please pray that he be able to suck and swallow so he can eat without a tube. He no longer has a breathing tube down his throat, but he had one for about 10 days and was intubated again for surgery yesterday, so I'm sure his throat is still sore. Not to mention that he just doesn't feel all that well in general. But they are not happy with his sucking and swallowing. The neurologist is going to send an occupational therapist (OT) along with the speech/language therapist to help. If it doesn't get better soon they will want to put a feeding tube into his belly. The feed tube now goes into his nose, down his throat and into his belly. It can't stay there forever because those tubes can cause irritation of the nasal passages and can lead to sinus infection and other problems. A tube in his stomach would mean another surgery and that I will not be able to feed him. I hope so much to avoid any further surgeries--plus, I want to be able to feed him again and for Jamie to be able to give him a bottle. So, please keep up the prayers and good thoughts--I know he will be ok.
Thank you all again, for all your continuing support and love.
I will check in tomorrow and let you know how he is doing.
Love to you all,
Karla
Anyway--please keep praying and meditating and sending positive energy and thoughts. It never gets so normal that I stop praying. I just told a friend of ours that there are people from every spiritual tradition--and all over the world-- praying, meditating, focusing on Theo's healing and for support and strength for us. It is really wonderful.
For all the people out there who like to know specific things to pray for, please pray that he will get through his chemo without getting sick, pray that he will not contract any illnesses or infections (chemo makes your white blood count very low and therefore your immune system low--a cold can easily turn into pneumonia), pray that there be no cancer cells in his body--in his brain, on his spine, anyplace at all, that there be no damage to him at all as a result of the tumor or surgery or chemotherapy, and please pray that he be able to suck and swallow so he can eat without a tube. He no longer has a breathing tube down his throat, but he had one for about 10 days and was intubated again for surgery yesterday, so I'm sure his throat is still sore. Not to mention that he just doesn't feel all that well in general. But they are not happy with his sucking and swallowing. The neurologist is going to send an occupational therapist (OT) along with the speech/language therapist to help. If it doesn't get better soon they will want to put a feeding tube into his belly. The feed tube now goes into his nose, down his throat and into his belly. It can't stay there forever because those tubes can cause irritation of the nasal passages and can lead to sinus infection and other problems. A tube in his stomach would mean another surgery and that I will not be able to feed him. I hope so much to avoid any further surgeries--plus, I want to be able to feed him again and for Jamie to be able to give him a bottle. So, please keep up the prayers and good thoughts--I know he will be ok.
Thank you all again, for all your continuing support and love.
I will check in tomorrow and let you know how he is doing.
Love to you all,
Karla
Wednesday, September 07, 2005
Surgery went well
He is having another CT scan done now just to check and make sure everything is in place ok. Everything went well and he is doing fine. They said actually, that everything went "perfectly" and he did "great". He was intubated for the surgery and as soon as it was over, he began to wake up and breathe on his own.
He had to have the Hickman catheter placed instead of the portacath (the one that goes under the skin). The Hickman is a long, thin tube made of silicone that is inserted into one of the main blood vessels next to the heart. One end of the line remains outside the body and acts like a permanent IV. All the medications he is currently receiving can be given through the line. His chemotherapy drugs will go through the line, and blood can be drawn through the line. The really good thing is that there is always intravenous access--no more sticking ever again while this thing is in place. The drawbacks are that because the line is always outside the body, chances of infection are greater, it must always have a sterile dressing and be flushed or irrigated daily. It can't be submerged it in water, so baths will be a little trickier, but we will learn how to do it. Also, his swimming career will have to be put on hold for a while, but that's ok :-)
His veins are too little to support the portacath line. As young as he is and with all the trouble they've had with his veins anyway, I was expecting him to come back with the Hickman. It's ok, the important thing is that he is doing well.
So, now his Hickman is in place and his shunt is in place. They will probably start the chemotherapy this weekend (probably Saturday). The first doses are given over a three-day period. We're hoping he might be able to come home late next week sometime. Several of the chemo doses are in-patient but not all of them. We will learn more about it over time. I have the schedule for the treatment protocol.
There are four different medicines that he will recieve and they group them together in 3 groups A1, A2 (which are different doses of the same two medicines) and B which is two different medicines. The B group of medicine is the most toxic and are the ones which cause more of the worst side effects. During the first four weeks he will recieve A1 medicines once a week. The second 4 week period, he recieves A2 once a week for 2 weeks and then gets two weeks off. Next is the B group of medicines which he gets three times in one week, has an evaluation, probably CT scans and MRIs (blood tests are given throughout the treatment time to check his blood count and other things). Then he will start back the very next week with A1. Then the schedule of delivery changes again.
It's a lot of medicine and a lot of time spent with the pediatric oncologists and at the hospital. With the working schedules we both have now, one of us will be able to take him every time--sometimes they will be on the weekend and we can both be there. The schedule varies over the 70 week period, but as I said, he may not get it for all those weeks, it just depends on how things go.
I'm sorry if this is all a little confusing. I think I'm also using this format to try to understand the whole thing myself--on a lot of different levels. I will give you more information on the medicines themselves and the side effects if you want it. One thing that's interesting is that the most toxic of the medicines is Cisplatin which is basically liquid platinum. Funny how desirable platinum is outside the body. Don't swallow your platinum wedding bands. Just kidding--I don't think that would hurt you--but for sure don't melt them down into liquid form and inject them into your veins. Cisplatin's partner is called Cytoxin whose name just sounds evil. It's like a the name of a comic book villain who has one eye that shoots poison or something.
BUT--they will all work hard to kill any cancer cells that may be left behind or that try to sneak back. Which we will not allow. It's just that he will have to be sick and nauseated and have stomach pain and metal taste in his mouth and low blood cell counts, possible hearing loss (cisplatin), constipation, muscle weakness, etc. and he will not be able to tell me and will not understand why is goign through what he is going through. Or maybe he does understand on a level that I cannot. I don't know. He seems very content and looks very much at peace. And he looks wise--very wise, as if he knows something that we do not. Which I am sure he does. This is all something we all are just having to live through. Somehow we will do it--we are doing it. And after it is done, it will be done and he will continue to be healthy and strong and alive and happy and cancer free. I know it.
One more tidbit of information--did you know Clorox kills cancer cells? but there is no way to get it into people without it killing them too. Add that to your trivia knowledge base--it might come in handy someday.
I will give you more updates as they come along. We are all doing ok --as ok as we can. I'll let you know tomorrow how the baby boy is doing and what the doctors say about starting chemo.
Love to you all---
Karla
XOXOX
He had to have the Hickman catheter placed instead of the portacath (the one that goes under the skin). The Hickman is a long, thin tube made of silicone that is inserted into one of the main blood vessels next to the heart. One end of the line remains outside the body and acts like a permanent IV. All the medications he is currently receiving can be given through the line. His chemotherapy drugs will go through the line, and blood can be drawn through the line. The really good thing is that there is always intravenous access--no more sticking ever again while this thing is in place. The drawbacks are that because the line is always outside the body, chances of infection are greater, it must always have a sterile dressing and be flushed or irrigated daily. It can't be submerged it in water, so baths will be a little trickier, but we will learn how to do it. Also, his swimming career will have to be put on hold for a while, but that's ok :-)
His veins are too little to support the portacath line. As young as he is and with all the trouble they've had with his veins anyway, I was expecting him to come back with the Hickman. It's ok, the important thing is that he is doing well.
So, now his Hickman is in place and his shunt is in place. They will probably start the chemotherapy this weekend (probably Saturday). The first doses are given over a three-day period. We're hoping he might be able to come home late next week sometime. Several of the chemo doses are in-patient but not all of them. We will learn more about it over time. I have the schedule for the treatment protocol.
There are four different medicines that he will recieve and they group them together in 3 groups A1, A2 (which are different doses of the same two medicines) and B which is two different medicines. The B group of medicine is the most toxic and are the ones which cause more of the worst side effects. During the first four weeks he will recieve A1 medicines once a week. The second 4 week period, he recieves A2 once a week for 2 weeks and then gets two weeks off. Next is the B group of medicines which he gets three times in one week, has an evaluation, probably CT scans and MRIs (blood tests are given throughout the treatment time to check his blood count and other things). Then he will start back the very next week with A1. Then the schedule of delivery changes again.
It's a lot of medicine and a lot of time spent with the pediatric oncologists and at the hospital. With the working schedules we both have now, one of us will be able to take him every time--sometimes they will be on the weekend and we can both be there. The schedule varies over the 70 week period, but as I said, he may not get it for all those weeks, it just depends on how things go.
I'm sorry if this is all a little confusing. I think I'm also using this format to try to understand the whole thing myself--on a lot of different levels. I will give you more information on the medicines themselves and the side effects if you want it. One thing that's interesting is that the most toxic of the medicines is Cisplatin which is basically liquid platinum. Funny how desirable platinum is outside the body. Don't swallow your platinum wedding bands. Just kidding--I don't think that would hurt you--but for sure don't melt them down into liquid form and inject them into your veins. Cisplatin's partner is called Cytoxin whose name just sounds evil. It's like a the name of a comic book villain who has one eye that shoots poison or something.
BUT--they will all work hard to kill any cancer cells that may be left behind or that try to sneak back. Which we will not allow. It's just that he will have to be sick and nauseated and have stomach pain and metal taste in his mouth and low blood cell counts, possible hearing loss (cisplatin), constipation, muscle weakness, etc. and he will not be able to tell me and will not understand why is goign through what he is going through. Or maybe he does understand on a level that I cannot. I don't know. He seems very content and looks very much at peace. And he looks wise--very wise, as if he knows something that we do not. Which I am sure he does. This is all something we all are just having to live through. Somehow we will do it--we are doing it. And after it is done, it will be done and he will continue to be healthy and strong and alive and happy and cancer free. I know it.
One more tidbit of information--did you know Clorox kills cancer cells? but there is no way to get it into people without it killing them too. Add that to your trivia knowledge base--it might come in handy someday.
I will give you more updates as they come along. We are all doing ok --as ok as we can. I'll let you know tomorrow how the baby boy is doing and what the doctors say about starting chemo.
Love to you all---
Karla
XOXOX
Reply from St. Jude Children's Hospital
Our oncologist, Dr. Massey, who sent all Theo's information to St. Jude's, came in to see me yesterday afternoon and to report on what she heard from them. They told her that the would do the exact same thing MCV has planned in the treatment protocol for chemotherapy. The reason that the protocol lists 70 weeks is because the doses are so small--and Theo--is so small. He may not actually have to go 70 weeks, it just depends on the CT scans and MRIs over the next several months. I spoke to Drs. Dunn and MAssey about the case of a little boy whose story my mom found online who had the same kind of tumor as Theo's. His surgery did not go well and his family went to St. Jude's. They gave him chemo for 10 weeks to "harden" the tumor and their surgeons removed it. Then he got 10 more weeks of chemo and then conformal radiation, which does a better job of targeting the tumor tissue and not the surrounding brain. He is doing fine now. He was a year and a half old. The St. Jude doctors said they knew the case, because even they have had very few cases of choroid plexus carcinoma, and that the difference was due mainly because of age and because of the problems with that child's first surgery. His doses of chemo were much higher and they said they would never irradiate a child under 1 year of age, which is what MCV said also. They will remain as consulting doctors on the case, but we are staying here. It is possible that after Theo's first birthday (which will be one HUGE party!), he may get radiation if it is indicated. But he may very well not need it. Again, it all just depends on the pictures and evaluations as we go along. I am glad that we got the extra input and feel much better about the treatment plan now. Dr. Massey is really wonderful and has done a lot to help me feel more at ease. We will probably start his chemo on Friday or Saturday depending on how he is doing following his surgery which is going on right now. The first round will take three days.
They haven't done the occipital lobe test yet--the one where they hook leads up to the back of his head where the vision center of the brain is located adn then flash several lights to see if there is brain activity. Remember the opthamologists said every thing in the actual eyes are working normally. But I think he is seeing more every day, he focuses on me for a minute and then looks away like it's just too hard for him to sustain the eye contact. When I called the nurse this morning to see how his night went, she had to stick him once to draw blood for labs (thank goodness it was only once) and she said, "he looked at me and made a face, cried for a second and went right back to sleep". But she too can tell that he looked at her. So, I think he is just taking his time healing. I think he sees a little better every day.
I will let you know how he is doing this evening. I don't expect any problems. They tell me these procedures are routine. It should take 3 to 4 hours to get everything done.
Talk to you soon---
Love,
Karla
They haven't done the occipital lobe test yet--the one where they hook leads up to the back of his head where the vision center of the brain is located adn then flash several lights to see if there is brain activity. Remember the opthamologists said every thing in the actual eyes are working normally. But I think he is seeing more every day, he focuses on me for a minute and then looks away like it's just too hard for him to sustain the eye contact. When I called the nurse this morning to see how his night went, she had to stick him once to draw blood for labs (thank goodness it was only once) and she said, "he looked at me and made a face, cried for a second and went right back to sleep". But she too can tell that he looked at her. So, I think he is just taking his time healing. I think he sees a little better every day.
I will let you know how he is doing this evening. I don't expect any problems. They tell me these procedures are routine. It should take 3 to 4 hours to get everything done.
Talk to you soon---
Love,
Karla
Tuesday, September 06, 2005
Change in plans 9/06/05
Neurosurgery just called up to the nurses to tell us that his surgery will not happen today but tomorrow. Apparently, due to the holiday weekend, pre-scheduled surgeries and the number of traumas, the OR rooms are backed up. This morning, they changed him from evening to an earlier time--noonish--but then there were some problems with the surgery right before him so he was bumped back to the late afternoon. Now, because of the overabundance of surgeries/holiday backup/trauma going on, they can't get a room after 4:00 p.m. for neurosurgery. Since they want to do the portacath and the shunt at the same time, pediatric surgery (placing the portacath) and neurosurgery (placing the shunt)must coordinate times and operating rooms, so he will go tomorrow. This is really ok with me because it gives him another day to rest, get stronger and just take a break.
Otherwise, he is doing fine. I just left the room where he is sleeping peacefully with a full belly of breastmilk, a dose of tylenol and a dose of methadone--which he is now getting on a PRN (as needed) basis. He was a little shaky and his heart rate was somewhat higher than normal so, I suggested he get his PRN drugs and the doctors agreed. He looks so beautiful and content.
I feel very positively about him. I really do know that he will be ok. It's just getting through it all that is so hard. I am so grateful, and so is Jamie, for all the wonderful support and love we have been receiving from so, so many people. I want you all to know how strongly I really do feel and sense your support, love, and positive energies constantly flowing to us. I know at any given moment, someone is thinking of us, praying for us, sending us love, good thoughts, positive energies, wishing us well. I can't tell you how much it means to us. And all the people who have done so many things to help us out: coming over to walk Chloe, feeding her and the cats in the evenings when we are here at the hospital, sending off packages for me, picking up a book for Jamie, getting our mail, dropping off yummy gazpacho, bread and cheese, brownies, Ukrops gift cards, gift certificates for the coffee bar here n the hospital, $$ with notes to get a good dinner, etc., coming over to clean our house, droppign off dragonflies :-)--all these things and more our dear friends, family and neighbors have done for us. Not to mention all the beautiful, supportive, uplifting emails I get daily. Thank you all so much. I can't tell you enough how much all this has meant and continues to mean to us. I could never repay all the love and kindness extended to us. We love you all so much in return and feel so blessed, loved and supported.
I will, of course, keep you updated. I don't expect any further changes today. I'll let you know about his surgery tomorrow.
All our love--
Karla
Otherwise, he is doing fine. I just left the room where he is sleeping peacefully with a full belly of breastmilk, a dose of tylenol and a dose of methadone--which he is now getting on a PRN (as needed) basis. He was a little shaky and his heart rate was somewhat higher than normal so, I suggested he get his PRN drugs and the doctors agreed. He looks so beautiful and content.
I feel very positively about him. I really do know that he will be ok. It's just getting through it all that is so hard. I am so grateful, and so is Jamie, for all the wonderful support and love we have been receiving from so, so many people. I want you all to know how strongly I really do feel and sense your support, love, and positive energies constantly flowing to us. I know at any given moment, someone is thinking of us, praying for us, sending us love, good thoughts, positive energies, wishing us well. I can't tell you how much it means to us. And all the people who have done so many things to help us out: coming over to walk Chloe, feeding her and the cats in the evenings when we are here at the hospital, sending off packages for me, picking up a book for Jamie, getting our mail, dropping off yummy gazpacho, bread and cheese, brownies, Ukrops gift cards, gift certificates for the coffee bar here n the hospital, $$ with notes to get a good dinner, etc., coming over to clean our house, droppign off dragonflies :-)--all these things and more our dear friends, family and neighbors have done for us. Not to mention all the beautiful, supportive, uplifting emails I get daily. Thank you all so much. I can't tell you enough how much all this has meant and continues to mean to us. I could never repay all the love and kindness extended to us. We love you all so much in return and feel so blessed, loved and supported.
I will, of course, keep you updated. I don't expect any further changes today. I'll let you know about his surgery tomorrow.
All our love--
Karla
Monday, September 05, 2005
Labor Day, 9/5/05
The thought of Labor Day now makes me think of giving birth. I kind of feel like that's what we've been doing--going through a new birth. And I do know that just like the first time, it may feel really painful and like it might kill me any second, but suddenly it will be over and he will be here in my arms, healthy and beautiful and all the pain will seem magically gone. That's just what it will be like. This time it's more drawn out (although the first time sure did seem to take forever!).
Just to keep you updated, he is going in for his placement of either the portacath or the Hickman (for chemo delivery and iv) tomorrow around 5:00 or 6:00p.m.
The neurosurgeons will place the permanant shunt in at the same time. They should be done around 8:00p.m.. I will, of course, let you know how it goes, but we nor the surgeons expect any problems.
We have moved down the hall from 7-608 to 7-612 in the PICU. For people who have the phone number to 608--our old room on the PICU: the new number is the same but ends in 26 instead of 34. We are still in the PICU, just in a different room. While we were out at dinner last night, our nurse moved us to the new empty room so Theo could have a TV--the one in 608 was broken. I really didn't care though. It's amazing how little I have missed TV. Our TV at home has stayed on Animal Planet for Chloe to watch, and I don't even change it from there except to catch maybe three minutes of news in the mornings. Theo does seem to watch the moving images and colors though, so if he is happy, I am happy. Speakign of what he is seeing--the opthamologists haven't done the occipital test yet--I'll let you know when they do.
Everyone please keep us in your thoughts tomorrow evening for the surgery. I'm really hoping his veins can support the portacath so he won't have anything dangling outside his little body. We won't know till the surgeon gets in there and sees what she can see.
Stuff will be sent out to St. Jude's tomorrow by FedEx. Hopefully they will be in contact with Dr. Massey tomorrow as well.
Stay tuned...
Love to you all--
Karla
Just to keep you updated, he is going in for his placement of either the portacath or the Hickman (for chemo delivery and iv) tomorrow around 5:00 or 6:00p.m.
The neurosurgeons will place the permanant shunt in at the same time. They should be done around 8:00p.m.. I will, of course, let you know how it goes, but we nor the surgeons expect any problems.
We have moved down the hall from 7-608 to 7-612 in the PICU. For people who have the phone number to 608--our old room on the PICU: the new number is the same but ends in 26 instead of 34. We are still in the PICU, just in a different room. While we were out at dinner last night, our nurse moved us to the new empty room so Theo could have a TV--the one in 608 was broken. I really didn't care though. It's amazing how little I have missed TV. Our TV at home has stayed on Animal Planet for Chloe to watch, and I don't even change it from there except to catch maybe three minutes of news in the mornings. Theo does seem to watch the moving images and colors though, so if he is happy, I am happy. Speakign of what he is seeing--the opthamologists haven't done the occipital test yet--I'll let you know when they do.
Everyone please keep us in your thoughts tomorrow evening for the surgery. I'm really hoping his veins can support the portacath so he won't have anything dangling outside his little body. We won't know till the surgeon gets in there and sees what she can see.
Stuff will be sent out to St. Jude's tomorrow by FedEx. Hopefully they will be in contact with Dr. Massey tomorrow as well.
Stay tuned...
Love to you all--
Karla
Sunday, September 04, 2005
Septeber 4, 2004
He's doing well today. The reinsertion of the ventricular tube went well, but his IV slipped out just as they were finishing and they tried to find another vein after that for a good two hours and could not. It was so hard knowing they were sticking and sticking him and he was crying and crying and hurting and not understanding what was happening to him. They never could find a vein and just left it alone. I knew that they wouldn't. They decided to just wait and if they need to draw labs to try the old fashioned way, but hopefully they won't have to do anything at all involving his blood till he goes in on Tuesday to have the portacath inserted (the line next to the heart for chemo delivery).
All his meds right now go in the NG (feeding) tube. He is still getting the steroids and phenobarbitol but they are weaning him off both. He is also still getting Methadone but now only twice a day. He gets tylenol pretty regularly, it seems to make him feel better--I think his throat is still sore and he for sure had a headache yesterday.
His head CT today looked good. I haven't heard any details, but no news about a CT scan is good news.
We aren't trying to breast or bottle feed right now to avoid any chance that he might aspirate. We don't need another thing happening.
The newest development today is that this whole reinsertion of the ventric tube reveals that he has hydroencehpaly (water on the brain--except it's not water but cerebral spinal fluid). Basically, it's a condition in which the CSF does not drain properly from the ventricles in the normal way. We make new fluid all the time and we drain it from our ventricles all the time, but now his will not drain. So, they are going to put a permanent shunt in his head. They will do it at the same time on Tuesday when they do the portacath. It really is permanent too. It stays there his whole life. It's a very small tube that will run from his ventricle down to his stomach from where he will just pass the extra fluid out of his body. The tube is long and coiled up in his belly so that it will uncoil as he grows and gets taller and bigger. They said that it will not impact his life in any way--he can run and jump and dance and ride bikes and swim and play and basically be and act like a regular kid. They said about half of all kids with brain tumors have these. There will be a small bump on his head and other than that, it will be totally invisible and unobtrusive.
It's just one thing after another it seems. They tell me these shunts are "not uncommon", it's "not uncommon" to have to dig and dig for a vein on a baby--and I know they're teling me the truth --thsee things are not uncommon in this sitiuation, but the whole thing is so uncommon. Totally uncommon.
He is resting peacefully and his color looks good. Earlier he was sleeping with his arms all sprawled out, like he did before any of this happened and, except for the tube in his nose and head, he looked almost like his old (3 month old) self. He is such a sweet little baby.
Dr. Massey, one of the oncologists told me she emailed St. Jude's and left all her information. She expects to hear from them early Tuesday and she will Fed Ex his info and pictures and scans and records to them on Tuesday as well. As soon as we hear anything we'll let you know. We may be going to Memphis (where St. Jude is located) pretty soon. We'll see.
I'll let you know if I hear anything else about the CT scan done today. Nothing else is scheduled to happen till Tuesday when the portacath and the shunt will be placed.
Keep praying and thinking good thoughts --
Love to you all,
Karla
XOXOX
All his meds right now go in the NG (feeding) tube. He is still getting the steroids and phenobarbitol but they are weaning him off both. He is also still getting Methadone but now only twice a day. He gets tylenol pretty regularly, it seems to make him feel better--I think his throat is still sore and he for sure had a headache yesterday.
His head CT today looked good. I haven't heard any details, but no news about a CT scan is good news.
We aren't trying to breast or bottle feed right now to avoid any chance that he might aspirate. We don't need another thing happening.
The newest development today is that this whole reinsertion of the ventric tube reveals that he has hydroencehpaly (water on the brain--except it's not water but cerebral spinal fluid). Basically, it's a condition in which the CSF does not drain properly from the ventricles in the normal way. We make new fluid all the time and we drain it from our ventricles all the time, but now his will not drain. So, they are going to put a permanent shunt in his head. They will do it at the same time on Tuesday when they do the portacath. It really is permanent too. It stays there his whole life. It's a very small tube that will run from his ventricle down to his stomach from where he will just pass the extra fluid out of his body. The tube is long and coiled up in his belly so that it will uncoil as he grows and gets taller and bigger. They said that it will not impact his life in any way--he can run and jump and dance and ride bikes and swim and play and basically be and act like a regular kid. They said about half of all kids with brain tumors have these. There will be a small bump on his head and other than that, it will be totally invisible and unobtrusive.
It's just one thing after another it seems. They tell me these shunts are "not uncommon", it's "not uncommon" to have to dig and dig for a vein on a baby--and I know they're teling me the truth --thsee things are not uncommon in this sitiuation, but the whole thing is so uncommon. Totally uncommon.
He is resting peacefully and his color looks good. Earlier he was sleeping with his arms all sprawled out, like he did before any of this happened and, except for the tube in his nose and head, he looked almost like his old (3 month old) self. He is such a sweet little baby.
Dr. Massey, one of the oncologists told me she emailed St. Jude's and left all her information. She expects to hear from them early Tuesday and she will Fed Ex his info and pictures and scans and records to them on Tuesday as well. As soon as we hear anything we'll let you know. We may be going to Memphis (where St. Jude is located) pretty soon. We'll see.
I'll let you know if I hear anything else about the CT scan done today. Nothing else is scheduled to happen till Tuesday when the portacath and the shunt will be placed.
Keep praying and thinking good thoughts --
Love to you all,
Karla
XOXOX
Saturday, September 03, 2005
Moved again 9/3/05
10:30 p.m.
Well, anyone planning to visit us in the new room, change your plans. We've been moved back to the PICU. I'm very happy to be back with our favorite and very competent nurses, but not so happy with the reason we moved. The sutures where the ventric tube was removed has been leaking fluid since yesterday--they stitched it up tighter three times before it began leaking today for the fourth time. We were kind of wondering whether since the thing was leaking fluid that maybe the tube shouldn't have been left in--but we aren't brain surgeons. Anyway, they did a CT scan today, ordered several days ago to check on progress of healing, and found that the ventricles were enlarged indicating a superfluous amount of fluid. He needed to drain and couldn't. So they are putting the ventric tube back in. I wondered why they didn't leave the thing in anyway until his IPCs were consistently in single digits, but again, not a brain surgeon. They said, "clinically, he looked so good". The good news in the scan showed that the mid-line of the brain is now perfect and the right side (where the tumor was) has made good progresss toward it's normal shape--it still has a little ways to go but other than the excess fluid, his brain looks pretty good.
So anyway, we are back in our old room--7-608. Some one was slated to take it but then the new patient ended up not requiring intensive care. All those with the phone number, it's the same as it was.
They are in there now replacing the line. We have no reason to think it won't go well, but I will for sure update you tomorrow. The worst part was trying to get a vein for the IV and for labs. I hate to see him in pain. And it hurts for someone to be rooting around lookign for a vein. After several valiant tries, our great team of nurses and the brilliant vein-finding Dr. Melissa found a vein using an ultrasound machine and got the needle in that way. Poor little Theo's veins are so tiny and he's been stuck so many times since we've been here. I stayed in and rubbed his head and sang to him while they looked for veins. Hopefully they will be done with the procedure in a few minutes and he will have his methadone, some tylenol and some breastmilk (Theo's favorite cocktail) and sleep soundly throughout the night under the watch of the wonderful PICU nurses. I feel so much better knowing they are watching over him (along with his guardian angels :-)
Check in tomorrow---
Love,
Karla
Well, anyone planning to visit us in the new room, change your plans. We've been moved back to the PICU. I'm very happy to be back with our favorite and very competent nurses, but not so happy with the reason we moved. The sutures where the ventric tube was removed has been leaking fluid since yesterday--they stitched it up tighter three times before it began leaking today for the fourth time. We were kind of wondering whether since the thing was leaking fluid that maybe the tube shouldn't have been left in--but we aren't brain surgeons. Anyway, they did a CT scan today, ordered several days ago to check on progress of healing, and found that the ventricles were enlarged indicating a superfluous amount of fluid. He needed to drain and couldn't. So they are putting the ventric tube back in. I wondered why they didn't leave the thing in anyway until his IPCs were consistently in single digits, but again, not a brain surgeon. They said, "clinically, he looked so good". The good news in the scan showed that the mid-line of the brain is now perfect and the right side (where the tumor was) has made good progresss toward it's normal shape--it still has a little ways to go but other than the excess fluid, his brain looks pretty good.
So anyway, we are back in our old room--7-608. Some one was slated to take it but then the new patient ended up not requiring intensive care. All those with the phone number, it's the same as it was.
They are in there now replacing the line. We have no reason to think it won't go well, but I will for sure update you tomorrow. The worst part was trying to get a vein for the IV and for labs. I hate to see him in pain. And it hurts for someone to be rooting around lookign for a vein. After several valiant tries, our great team of nurses and the brilliant vein-finding Dr. Melissa found a vein using an ultrasound machine and got the needle in that way. Poor little Theo's veins are so tiny and he's been stuck so many times since we've been here. I stayed in and rubbed his head and sang to him while they looked for veins. Hopefully they will be done with the procedure in a few minutes and he will have his methadone, some tylenol and some breastmilk (Theo's favorite cocktail) and sleep soundly throughout the night under the watch of the wonderful PICU nurses. I feel so much better knowing they are watching over him (along with his guardian angels :-)
Check in tomorrow---
Love,
Karla
9/3/05
I'm writing from home before I go in to the hospital. Sorry there was no post yesterday, it was a hectic and long day.
Some very good changes to report: He made several attempts to suck and nurse yesterday at his feeding time! And he took a bottle of breastmilk for a short time. He had "failed" two suck tests when the speech pathologist came to see him on two separate occasions--both times when I wasn't there. Apparently, the test is some touching and feeling of his jaw and throat and mouth and then trying to get him to suck on a pacifier or a bottle nipple. They won't even give the barium swallow test until he passes the suck test. I told them 20 times "He won't take a pacifier--he will not suck one--he doesn't like them" and I told them, "He is really, really particular about the nipples on his bottles". He will only use the original nipples that came with the Enfamil ready-formula bottles they had in the hospital when he was born and some gerber ones that I bought that are a little bigger than the normal ones and which I can't find anymore, anyplace--so we have about 6 nipples that he will use. I brought some in after he "failed" the suck test the first time and they didn't use them again the second time either. I was at work both times they came in to the test. They don't ever make appointments for anything in there, we just have to hope we're there when things happen. Sometimes we know there is a two or three hour window in which things may (or may not) happen, like the doctors coming by or speech people or whomever.
The nurses are the most reliable people in the hospital.
Anyway--so yesterday they were talking about wanting to put in a GI tube--a feeding tube inserted directly into his stomach--based on these two "failed" tests. And we said no. I wanted to try myself. They told me I could but a nurse had to be present in case he aspirated (and to be sure I wasn't just saying that he was sucking when he wasn't). We waited till his next scheduled feed time so he would be hungry. I held him and put him to my breast. I had to put my nipple into his lips wchih just by itself seemed to give him a lot of comfort, but I kept talking to him and moving it around his mouth and he finally started to respond, suckign a little bit, moving his mouth around. It was like he was trying to remember how to nurse and he almost latched on but he definitely made the effort to suck several times. We put some breastmilk into a bottle with one of his nipples from home and he sucked more vigorously and swallowed about 5 ml of the milk. I think hi sthroat is still really sore from 9 days of intubation and it is hard to swallow. The nurse wrote everything in her notes. This was a great thing for him--and for me. IT was such a good feeling to see him sucking and feeding.
So, no way is he getting a tube put into his stomach.
We will try again each feeding time that I am there. He eats at 8:00 a.m., 12:00 noon, 4:00p.m., 8:00p.m., 12 midnight and then again at 4:00 a.m. I will try each day time and evening feeding.
In other news, he was moved from the PICU to the regular pediatric hall--same floor. Visitors, instead of going to the left when you get to the security table, take a right and go down the hall to the nurses station. You still have to check in with the guard. We are now in room 7-316. I don't have the phone number with me--so if you want to call the room, call the hospital and ask for the pediatric floor nurses station and then ask them for the room. I will miss our great nurses on the PICU and it will take some getting used to a new, smaller room--we have been in room 608 on the PICU for two weeks.
He is responding to us much more and knows when we're there. Jamie now has the magical ability to calm him when he cries, by somehow rubbing his forehead and temples--it works immediately and no one else can seem to do like his Daddy. He responds to other people too--my mother and my grandmother came in town yesterday and he knows the sound of my mom's voice, he calms down and stops to listen to her. He always stops crying and fussing when I hold him. You should see how peaceful and contented he looks when he is in my arms, he is just beautiful.
He still can't seem to see us, but I think he is trying to focus and doing so, more than he was. The opthamologists came in and tested his eyes and they say the eyes are fine, the pupils, cornea and "beautiful baby retina" are working as they are supposed to and responding to light and stimuli appropriately. There may be some problem with the occipital lobe that will correct itself eventually, due to the swelling and general trauma of the surgery. They are planning to do a test next week where they hook up EEG type leads to the occipital area of his head to see what the brain is doing when the stimulus comes in to the eyes. Some of the nurses seem to think he is seeing more light and shadow differential as well.
I talked to the St. Jude Children's Hospital people yesterday and they told me that I must have our doctor here call them and send all of Theo's information and x-rays, CTs, MRIs, etc. I told Dr. Dunn of the Heemonks yesterday that I wanted that done as soon as possible and she agreed. I will mention it again to whichever one of the oncologists we see next. I will make sure he gets whatever he needs. Most likely they will contact St. Jude on Tuesday, due to the holiday Monday. Either way though, he is scheduled to have the procedure to insert the catheter tubing into his artery (near the heart) on Tuesday to receive the chemo. No matter where he goes for treatment, he will have to have chemotherapy so it makes sense to go ahead and get the tubes put in. We hope he will get the under-the-skin port, which is way more convenient and easier to take care of and I think more comfortable emotionally for us and physically for him, but he may end up with the tubes that remain on the outside and which need to be flushed daily, dressings changed, etc. It just depends on what the surgeon sees when he or she gets in there. It all depends on his arteries and which kind of catheter his little body can best support.
Please continue prayers and meditations, chanting and dedications, singing, sending, focusing, loving, postive energies, to our boy and to us.
Thank you all for your continuous love and prayer and support.
I will let you know each thing that happens and I will keep you updated on the situation with St. Jude.
YAY! He's sucking!!
Love,
Karla
xoxoxo
Some very good changes to report: He made several attempts to suck and nurse yesterday at his feeding time! And he took a bottle of breastmilk for a short time. He had "failed" two suck tests when the speech pathologist came to see him on two separate occasions--both times when I wasn't there. Apparently, the test is some touching and feeling of his jaw and throat and mouth and then trying to get him to suck on a pacifier or a bottle nipple. They won't even give the barium swallow test until he passes the suck test. I told them 20 times "He won't take a pacifier--he will not suck one--he doesn't like them" and I told them, "He is really, really particular about the nipples on his bottles". He will only use the original nipples that came with the Enfamil ready-formula bottles they had in the hospital when he was born and some gerber ones that I bought that are a little bigger than the normal ones and which I can't find anymore, anyplace--so we have about 6 nipples that he will use. I brought some in after he "failed" the suck test the first time and they didn't use them again the second time either. I was at work both times they came in to the test. They don't ever make appointments for anything in there, we just have to hope we're there when things happen. Sometimes we know there is a two or three hour window in which things may (or may not) happen, like the doctors coming by or speech people or whomever.
The nurses are the most reliable people in the hospital.
Anyway--so yesterday they were talking about wanting to put in a GI tube--a feeding tube inserted directly into his stomach--based on these two "failed" tests. And we said no. I wanted to try myself. They told me I could but a nurse had to be present in case he aspirated (and to be sure I wasn't just saying that he was sucking when he wasn't). We waited till his next scheduled feed time so he would be hungry. I held him and put him to my breast. I had to put my nipple into his lips wchih just by itself seemed to give him a lot of comfort, but I kept talking to him and moving it around his mouth and he finally started to respond, suckign a little bit, moving his mouth around. It was like he was trying to remember how to nurse and he almost latched on but he definitely made the effort to suck several times. We put some breastmilk into a bottle with one of his nipples from home and he sucked more vigorously and swallowed about 5 ml of the milk. I think hi sthroat is still really sore from 9 days of intubation and it is hard to swallow. The nurse wrote everything in her notes. This was a great thing for him--and for me. IT was such a good feeling to see him sucking and feeding.
So, no way is he getting a tube put into his stomach.
We will try again each feeding time that I am there. He eats at 8:00 a.m., 12:00 noon, 4:00p.m., 8:00p.m., 12 midnight and then again at 4:00 a.m. I will try each day time and evening feeding.
In other news, he was moved from the PICU to the regular pediatric hall--same floor. Visitors, instead of going to the left when you get to the security table, take a right and go down the hall to the nurses station. You still have to check in with the guard. We are now in room 7-316. I don't have the phone number with me--so if you want to call the room, call the hospital and ask for the pediatric floor nurses station and then ask them for the room. I will miss our great nurses on the PICU and it will take some getting used to a new, smaller room--we have been in room 608 on the PICU for two weeks.
He is responding to us much more and knows when we're there. Jamie now has the magical ability to calm him when he cries, by somehow rubbing his forehead and temples--it works immediately and no one else can seem to do like his Daddy. He responds to other people too--my mother and my grandmother came in town yesterday and he knows the sound of my mom's voice, he calms down and stops to listen to her. He always stops crying and fussing when I hold him. You should see how peaceful and contented he looks when he is in my arms, he is just beautiful.
He still can't seem to see us, but I think he is trying to focus and doing so, more than he was. The opthamologists came in and tested his eyes and they say the eyes are fine, the pupils, cornea and "beautiful baby retina" are working as they are supposed to and responding to light and stimuli appropriately. There may be some problem with the occipital lobe that will correct itself eventually, due to the swelling and general trauma of the surgery. They are planning to do a test next week where they hook up EEG type leads to the occipital area of his head to see what the brain is doing when the stimulus comes in to the eyes. Some of the nurses seem to think he is seeing more light and shadow differential as well.
I talked to the St. Jude Children's Hospital people yesterday and they told me that I must have our doctor here call them and send all of Theo's information and x-rays, CTs, MRIs, etc. I told Dr. Dunn of the Heemonks yesterday that I wanted that done as soon as possible and she agreed. I will mention it again to whichever one of the oncologists we see next. I will make sure he gets whatever he needs. Most likely they will contact St. Jude on Tuesday, due to the holiday Monday. Either way though, he is scheduled to have the procedure to insert the catheter tubing into his artery (near the heart) on Tuesday to receive the chemo. No matter where he goes for treatment, he will have to have chemotherapy so it makes sense to go ahead and get the tubes put in. We hope he will get the under-the-skin port, which is way more convenient and easier to take care of and I think more comfortable emotionally for us and physically for him, but he may end up with the tubes that remain on the outside and which need to be flushed daily, dressings changed, etc. It just depends on what the surgeon sees when he or she gets in there. It all depends on his arteries and which kind of catheter his little body can best support.
Please continue prayers and meditations, chanting and dedications, singing, sending, focusing, loving, postive energies, to our boy and to us.
Thank you all for your continuous love and prayer and support.
I will let you know each thing that happens and I will keep you updated on the situation with St. Jude.
YAY! He's sucking!!
Love,
Karla
xoxoxo
Thursday, September 01, 2005
9/01/05
We met with the hematologist/oncologist Dr. Dunn who seemed less than encouraging. She underscored the great rarity of this type of tumor--Choroid plexus carcinoma--overall and the much greater rarity in infants. She spoke of a 70 week course of chemotheraopy and discussed the terrible side-effects including of course the ones we are all familiar with --nausea, vomiting, hair loss--but also talked about hearing loss and said that "many kids who have this chemo end up with hearing aids". She painted a pretty bleak picture. She also gave a much lower survival percentage than other information I looked up. I know each case is individual but I am planning on calling St. Jude tomorrow to discuss options with them and to look up all the information I can find. IF we do go on with treatment here, he will have surgery next week sometime to insert the port in an artery near his heart to deliver the chemo.
Other than that, he is doing fairly well, he still has the feeding tube, the speech person couldn't get up to look at him today so hopefully tomorrow. Both of us have been holding him, taking turns, nearly all day and it has been wonderful. He is so much more peaceful and content in our arms. I can tell for sure that he knows who is holding him and he recognizes my touch and my voice.
They have removed everything but the feed tube and will be moving him to the regular pediatric unit this evening or tomorrow mornign. So if you visit, we'll have a different phone number and room. I don't have any idea what room yet. The opthamologists visited today to check out his vision--I reported that I don't think he can see. And their tests showed that he is perceivign light and visual stimulus the way he should--the retina, cornea and pupil are all workign properly--but he is not tracking or responding to startle tests. They are ordering a EEG-like test that has leads hooked to the occipital area of the brain to test what brain activity occurs when there is stimulus in front of the eyes. It may be a temporary problem due to the trauma of the surgery. I think though, I have seen him focused on me a few times today.
I have a lot of mixed emotions today--I feel great that he is doing so much better right now, in the present moment. and not so great at all as a result of our conversation with the Heemonk. We'll see what further information I can come up with.
I will keep you all posted. Keep on praying and sending love---
Love,
Karla
Other than that, he is doing fairly well, he still has the feeding tube, the speech person couldn't get up to look at him today so hopefully tomorrow. Both of us have been holding him, taking turns, nearly all day and it has been wonderful. He is so much more peaceful and content in our arms. I can tell for sure that he knows who is holding him and he recognizes my touch and my voice.
They have removed everything but the feed tube and will be moving him to the regular pediatric unit this evening or tomorrow mornign. So if you visit, we'll have a different phone number and room. I don't have any idea what room yet. The opthamologists visited today to check out his vision--I reported that I don't think he can see. And their tests showed that he is perceivign light and visual stimulus the way he should--the retina, cornea and pupil are all workign properly--but he is not tracking or responding to startle tests. They are ordering a EEG-like test that has leads hooked to the occipital area of the brain to test what brain activity occurs when there is stimulus in front of the eyes. It may be a temporary problem due to the trauma of the surgery. I think though, I have seen him focused on me a few times today.
I have a lot of mixed emotions today--I feel great that he is doing so much better right now, in the present moment. and not so great at all as a result of our conversation with the Heemonk. We'll see what further information I can come up with.
I will keep you all posted. Keep on praying and sending love---
Love,
Karla
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